The ubiquity and popularity of the internet has proven to be both a curse and a blessing. While there are many dark and immoral sites across the web, there are numerous bright spots that have proven useful, helpful, and in some cases, life-saving. Below are thirteen innovative and restorative sites that offer community, education and hope for those plagued with all kinds of perplexing diseases.
CrowdMed
“The Wisdom
of Crowds -- The biggest flaw in today’s healthcare system is the expectation
that one doctor has all of the answers. CrowdMed provides the solution to this.
We have created one online destination that hosts a worldwide community of
Medical Detectives, each with a unique set of medical knowledge, and
collectively forming an incredibly well-rounded medical mind.
“Solving
Cases Faster -- By giving patients access to a wide variety of medical
expertise in one place, we save patients time and money by avoiding unnecessary
doctor visits and treatments, getting them back to health much faster than the
traditional medical system.
“Get Help
Today -- Millions of people suffer from difficult medical conditions, which
normally might take several months or years to diagnose. If you're reading
this, you're probably already frustrated and anxious. CrowdMed can help connect
your case with a world of Medical Detectives right away.”
Patients Like Me
“We've
partnered with 600,000+ people living with 2800+ conditions on 1 mission: to
put patients first:
“Imagine
this: a world where people with chronic health conditions get together and
share their experiences living with disease. Where newly diagnosed patients can
improve their outcomes by connecting with and learning from others who've gone
before them. Where researchers learn more about what's working, what's not, and
where the gaps are, so that they can develop new and better treatments.
“It's
already happening at PatientsLikeMe. We're a free website where people can
share their health data to track their progress, help others, and change medicine
for good.”
Find a Best Doctor™
“Best
Doctors was founded on the ideal that a person’s location should not limit the
quality of their care. As a result, our mission is to bring together the best
medical minds in the world to get you the right diagnosis and treatment, no
matter where you live. We are proud to offer a variety of services which focus
on getting you the very best care—each available without the need to travel.
“The Best
Doctors network includes over 50,000 of the world’s top medical experts. Each
has been designated as among the best by other doctors through an exclusive,
Gallup®-certified process. If you need to visit a specialist, we will search to
see if any of our doctors meet your criteria and practice within a distance
that works for you.”
Grand Rounds
“Want an
expert second opinion? A world-class physician will provide an expert second
opinion on your current diagnosis and treatment plan. No travel is required and
the process is completed in a matter of days.
“Need to see
a doctor in person? We’ll get you into the office of a quality-verified
physician. We’ll set the appointment, forward medical records on your behalf
and ensure insurance compatibility.
“Already in
the hospital? We can quickly provide support and help guide your care. We’ll
connect with you, your family or directly with your care team at the hospital.”
Compassionate Crowdfunding™
“How is
Compassionate Crowdfunding™ different? YouCaring is a free online fundraising
platform that pioneered Compassionate Crowdfunding™—empowering people worldwide
to rally support for personal and charitable causes without the fundraising
fees associated with other sites. To date, the YouCaring community is 5.5
million strong and has raised more than $500 million for humanitarian causes.”
Firsthand Insights into Cancer
Treatments
“Developed in part with the American Cancer Society, WhatNext uses
patent pending matching algorithms to connect people to highly relevant peers,
firsthand experiences and American Cancer Society resources. Additionally,
WhatNext gives people a way to share experiences with their illnesses using an
easy to use timeline format. As a result, when people share their experiences
they are catalogued and easy to find by others.”
Help For People With Rare Diseases
“Many
individuals want to know about healthcare professionals or researchers who have
knowledge of their conditions. When a condition is rare, it can be difficult to
find someone who has seen many cases. Although there is no list of experts in
rare diseases, the guidelines below include several ways to identify healthcare
professionals who have experience with a particular condition. Potential
resources include patient advocacy groups, researchers who have conducted or
are conducting clinical trials, and authors of articles published in the
medical literature.
“We are
providing these resources to assist you in your search; however, sometimes it
will not be possible to find a healthcare professional who has extensive
experience in a particular rare condition. At the bottom of this fact sheet, we
have provided some suggestions to help you when you are still unable to locate
an expert after researching these resources.”
How can I find a: Healthcare professional with experience in a specific condition? Specialty treatment center? Genetics clinic? Researcher who is studying my condition? What if I can’t find an expert?
Bridging The Gap Between Rare
Diseases And Research
“We are the
Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of
Rare Diseases Research (ORDR), NCATS. We are made up of 21 disease research
groups (consortia) and a Data Management and Coordinating Center that work
together improving the availability of rare disease information, treatment,
clinical studies, and general awareness for both patients and the medical
community. We study over 190 diseases and were the first to develop a
collaborative network of investigators and patient organizations (patient
advocacy groups) to support rare diseases research.”
Research Programs for People Without
a Diagnosis
“If an
individual’s health care providers and specialists have not been able to make a
definite diagnosis so far, participating in a research study or clinical trial
may be another option…..
“The
Undiagnosed Diseases Network (UDN) is a research study funded by the National
Institutes of Health Common Fund. The UDN is made up of clinical and research
centers across the United States working to improve diagnosis and care of
patients with undiagnosed diseases. Physicians and patients with additional
questions may call 1-844-746-4836 (1-844-Ring-UDN).
“ClinicalTrials.gov
is database that provides current information on clinical research studies. You
can search ClinicalTrials.gov for research studies looking at general
categories of diseases (e.g. neurological diseases or eye diseases) or specific
symptoms. Some studies accept individuals without a diagnosis with the research
goal of making a diagnosis.”
Evidence-Based Medicine
A 21st Century conundrum – questions there doesn’t seem to be
a simple answer to:
“Why do we use evidence every day when shopping, traveling, or buying
houses but never ask for the same evidence when our doctors make a
recommendation?” “Why don’t we demand evidence when other experts make
important claims about our health or environment?” One doctors’
personal mission to provide a solution.
Type 1 Diabetes
“Glu is an
online community of T1D Exchange, a unique nonprofit organization focused on
driving faster, better research to improve outcomes in type 1 diabetes.”
HealthTap
“Our mission
is to measurably prolong the life expectancy of humankind and help everyone
Feel Good by providing immediate access to top medical experts and their
trusted health advice anytime, anywhere.”
The Future of Medicine
Further Reading
How does crowdfunding work - the 7000 words insane guide [updated June 2020] https://www.spectroomz.com/how-does-crowdfunding-work-the-definitive-guide
CrowdMed: Would you trust Internet sleuths to diagnose rare disease? https://www.usatoday.com/story/tech/2015/11/30/crowdmed-would-you-trust-internet-sleuths-diagnose-rare-disease/76566272/
CrowdMed: Would you trust Internet sleuths to diagnose rare disease? https://www.usatoday.com/story/tech/2015/11/30/crowdmed-would-you-trust-internet-sleuths-diagnose-rare-disease/76566272/
Should Big
Data Pick Your Next Doctor? https://www.forbes.com/sites/matthewherper/2016/12/14/should-big-data-pick-your-next-doctor/#5968504316e7
The
Real Peril Of Crowdfunding Health Care https://www.buzzfeed.com/annehelenpetersen/real-peril-of-crowdfunding-healthcare?utm_term=.dd8X3plOBB#.yl5DdbmQpp
HealthTap
Reaches Major Milestone In Virtual Care Expansion http://fortune.com/2016/03/29/healthtap-virtual-care-expansion/
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Jerry De Luca is a Christian freelance writer who loves perusing dozens of interesting and informative publications. When he finds any useful info he summarizes it, taking the main points, and creates a (hopefully) helpful blog post.
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